It is pouring. We are just about to step out of the rain, into the building, when I stop, immobile.
I stare at the sliding glass entrance doors to Children’s Hospital. My mind travels back, remembering where we were just a few short months ago, how we walked these halls, traveling in and out of these doors like zombies, and how when we first entered them, our lives changed forever.
The doors slide open and suddenly we’re inside; they slide shut behind us. I take a breath and look across the lobby. I take another breath.
We wind our way through a maze of hallways and find the correct waiting room.
It’s then that I start to sweat, my throat tightens. I am shaky and tense. The overwhelming smell of the hand sanitizer is already threatening to tilt me toward panic. Breathe.
I look around. The space is decked out for Christmas (…breathe…). There is a Christmas tree or wreath or bow every five feet (….breathe….). It sparkles Christmas. All that’s missing is the Christmas music – nothing to cover the hospital sounds, the beeping monitors, the noises that had followed me home and sliced at me for weeks.
Tyler and I find a seat. There may be no music, but we were not without noise - we have an out of breath crying infant nearby (held by the most patient momma I’ve ever seen) the sound of another, tired and not so patient momma, yelling at her 5 year old to “hold my hand!!” They marched through the room.
It is one week away from Christmas and here we are. Our family of three on level one of children’s hospital. Nora is sleeping in my arms and Tyler is munching on some French fries. We are waiting to get Nora’s blood drawn.
I watch the people come and go, nurses, parents, kids; they all seem to be rushing or waiting.
“Tyler that’s the nurse from the ER, the one in the trauma room. Remember? She’s the one who reminded me of Callee”.
I will never forget her face. Ever. I’ll never forget how she so firmly yet tenderly cradled my seizing baby to the trauma room and how she fought for Nora and stayed by her side until she breathed again on her own.
“Should we say hi?”
“She’s on her lunch break… ”
At that moment, the Callee-nurse finishes her salad and disappears behind a door.
Someday I’ll thank her.
I stand up and bounce Nora around the waiting room.
I hear a stomp stomp stomp and I look to see a little girl in rain boots, and her brother, race to the check-in desk. She’s bald. I assume she had been there before; she seems to find it all too familiar. Her dad hands her a cup and she races around the corner to the bathroom. Her dad jogs after her to keep up.
“Tyler I think she has cancer.”
Tyler looks up from his phone
“Yeah I think so,” his heart breaks across his face for an instant.
A moment later she comes stomping back to her brother, and the two dive into what must be a competitive video game; they sit on the edge of their seats talking excitedly. I hate that she knew her way around so well, too well. But something about the way she is engaging with her environment is refreshing; she is just a kid. She is okay and just a kid.
I sit down next to Tyler and bring up Nora’s most recent neurology appointment.
“Ty, how did you feel about our appointment?”
“I think it went as well as it could have gone.”
We had spoken to Nora’s neurologist about the videos we’d been sending for the past week. The neurologist identified one of Nora’s “events” in the video as a seizure but was entirely uncertain about the other event.
She also said Nora’s background brain activity looked significantly improved in comparison to her past EEG’s, that we’d continue to adjust her medications as needed, and that hopefully we would have more clarity in the weeks to come.
“Yeah thought so, too”.
They call Nora’s name, and bustle us into a patient room. Nora sits on my lap with a tiny needle in her arm. She smiles at her nurse. It’s uneventful and quick.
The three of us then make our way out of the lab and back through the maze of halls. We pass the PICU (Pediatric Intensive Care) – a unit both Tyler and I are way too familiar with. I turn toward it.
“Wrong way, Jess”
“I know.”
I keep going toward the PICU waiting room anyway. People are scattered about.
I walk back to get Tyler.
“I just want to pray, to say thank you.”
Tyler nods and follows.
Our family of three huddles together in the hallway outside the PICU. We thank God for the doctors, nurses and all the special care for our baby. We thank Him for all our seizure free moments and days. For Nora’s smile, for her very breath. We pray our hearts out for the children inside that PICU, for each mommy and daddy sleeping in the windowsill of their baby’s room – for healing from our greatest pain, and theirs, seeing our child hurt. We thank Him for his faithfulness, for His goodness.
It is a hard prayer.
We are still learning to pray our hurt, our confessions and our confusion – but being able to walk past the PICU with our breathing, smiling baby, brings us to our knees. It’s our altar, our Jacob’s ladder, a place that makes us stop and say, “Surely God is in this place”.
I think of the rain-boot-girl in the waiting room, surrounded by the Christmas decorations. I think of all the broken pieces of all our stories, how it just doesn’t feel fair and how it might never make sense. I think of the Callee-nurse. How she loved. How she fought. How she cared. I think of that moment months ago, when Tyler and I quite honestly thought we were going to lose our baby on this unit, on a trauma room table. But she is right here, breathing. Alive, with us, a small family circled in prayer, undeniably humbled.
We continue on down the hall, a passing nurse smiles, and coos at Nora. We find ourselves in front of the same sliding glass doors and they open. It has stopped raining, the sun is setting. Nora is hungry, and we are in for a long traffic-filled ride home. Settled, finally, in the car, we crank the Christmas tunes and the heater. Nora reaches for her tinkling toy, Tyler reads me directions and I smile.
Surely God is in this place.
—
Photo credit: Jessica Rice Photography
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God bless you for sharing these intimate thoughts. We pray for you often ., You help us feel so grateful for our daughter who has reached 23 years of age , but still has issues, mental and emotional. I am convinced that God gives us the burdens that we are meant to have to to uphold. Merry Christmas!
So beautiful, so true. We slowly learn to pray our hurts and confusion. You are each loved and treasured – by God and by so many of His children.
Will always pray for a Christmas miracle.
Thank you, Nora’s Mom, for sharing the smiles that filled my heart with joy.
You are so strong and have come such a long way since that first hospital visit. May we all learn to “to pray our hurt” because that’s when we need to the most.
Oh,Jesse, thanks for your beautiful way of sharing. Your special Christmas has arrived, may it truly be filled with the hope and peace we receive through the promises we have through our faith on the birth of a baby so long ago. God Bless your little family
I am humbled and certainly teary eyed as I read this latest post. God is with you and has given you the strength to “pray our hurt” and what a beautiful sentiment that is for all of us to ponder. I hold the three of you in daily prayers and will continue to do so. You have been through much more than a young couple should have to go through, but with a special gift from God. He is forever walking beside you, taking your hands and holding you close.. Nora and you have come a far way from those first frightening days,, and wilh the grace of God, you will continue to go forward. As we celebrate Jesus’ birth, we will kneel before His cradle and place the three of you with Him. He is the greatest physician.
Merry Christmas and God bless you, Jess, Tyler, my bear loving little one of many years ago, and Nora.
Again we thank you for sharing your journey in such an insightful way. Went back to read the October post about Christmas Miricle. The Miricle here is not only Nora,s progress in small steps but the parents God chose for her. You two are an inspiration as to your faithfulness to your God through these times. May the hope and joy given to us in Jesus be yours as you continue to tend to your daughter.
Sending prayers for you all – keep writing -you have a gift, even though I know you would rather be writing about something else. Kiss that sweet Nora’s cheeks for us! Donna and Kyle B.
Dear Jesse ~
My heart is blessed by your words! Thankfulness is God’s gift to us amidst our hurts … He doesn’t need our gratitude, but what a balm for our souls to be on our knees in thanksgiving … overwhelmed by His goodness! My prayer is that you continue to “dare to hope” in 2015 … may His mercies amaze you!
“Yet I still dare to hope when I remember this: The faithful love of the Lord never ends! His mercies never cease.” Lamentations 3:21-22
In love …
Susie